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• EUROlinkCAT
• *PARENTS AREA*
• Infographics
• EUROlinkCAT Results Explorer
• WP 1 - Co-ordination & Management
• WP 2 - Building Results Repository
• WP2 Details
• Report of local data sources
• Variables
• WP3, WP4 and WP5 Subgroups
• EUROlinkCAT Public Common Data Models
• WP2 Deliverable D2.3 Report
• WP2 Deliverable D2.4 Report
• WP 3 - Survival
• WP 4 - Morbidity
• WP 5 - Education
• WP 6 - Accuracy of Coding
• WP 7 - ConnectEpeople
• WP 8 - Dissemination
• WP 9 - Ethics Requirements
• Publications
• Study Partners
• Useful Links
• Contact Information & Data Requests

The work package will proceed in the following way:

1. Ascertain individual registry capacity to link existing administrative/clinical/educational/prescription data to their congenital anomaly data extracted from the EUROCAT Data Management Program (EDMP). For each registry:

• Catalogue and document the datasets available for linkage, including regional or national coverage, years included and the availability of children without anomalies (controls) [All registries, UU]
• Produce meta-data/ data dictionary to describe these datasets. This includes a description of the dataset and variable names, variable descriptions/ definitions, coding instructions/ values (in English) [UU, BIOMED]
• Conduct an initial scoping exercise to assess the quality of the data to be linked (Quality Assurance) i.e. for study
• inclusion/ exclusion criteria purposes and for creating derived variables we need to ascertain if the variables are mostly complete or incomplete. [All registries, UU]
• Upload all the above documentation to the membership-only section of the website as individual WP leaders using linked data need this information for developing study protocols [UU]
• Develop a detailed data management plan conforming to all EU and national legislation.
• Oversee local registry ethics/research governance permission for conducting linkage studies [UU]
• Apply for ethical permission at Ulster University to hold the EUROlinkCATCentral Results Repository [UU]

2. Standardise linked data across participating registries (lead partners UU, BIOMED).

• Create a common data model (independent from study protocol/study design). This task ensures that all variables/proxy variables are standardised across all registries [UU, BIOMED, QMUL]
• Develop rules for each registry to generate derived study variables from the existing data [UU, BIOMED, QMUL]
• Develop rules for each registry to implement different study designs for example according to whether children without anomalies are available as controls [UU, BIOMED, QMUL]
• Agree on the common model with registries to ensure correct interpretation of local variables [UU, all registries]

3. Create the linked datasets needed for the protocols of WP3-6 (lead partners UU, QMUL).

• Create registry-specific syntax scripts to derive study variables, to implement study designs, and to run the pre-defined analysis for each WP study. These will be replicated by another individual for quality assurance [UU, BIOMED, QMUL]
• Registry data providers run the registry-specific syntax scripts using STATA, SPSS, or equivalent program to generate the required output aggregated tables and analytical results for WP3-6 analysis [All registries]
• Each registry/ data provider produces a data linkage report for quality assessment. This includes verification and validation of the derived variables/ data transformations, the methodology used to link cases in the different datasets, and matching success [All registries, UU]
• Develop a set of DQIs for the Central Results Repository to assess data quality i.e. to compare registries against the EUROCAT average [UU, QMUL]
• Upload all the above documentation to the membership-only section of the website for internal documentation [UU]

4. Develop the EUROlinkCAT Central Results Repository and associated website (lead partners BIOMED, UU)

• Build the website and install a CMS on the website [BIOMED]
• Develop a Central Results Repository for holding the registry aggregate output tables and analysis results (such as Odds Ratios and adjusted Odds Ratios) to be used in European meta-analysis [BIOMED]
• Implement DQIs in the Central Results Repository for comparison of registries to the EUROlinkCAT average [BIOMED]
• Create interactive web tables hosting aggregate tables: detailed information will be available on a membership-only section of the website, whilst more aggregated data will be available on the public section of the website [BIOMED, QMUL]
• Provide text for the website relating to Central Results Repository [BIOMED, UU, QMUL]
• Provide appropriate standard operating procedures documenting the Central Results Repository resource i.e. definitions, processes, activities, data security and data archiving [UU]
• Provide linked aggregate data (tables or analysis results) to other WPs to assess mortality, morbidity and educational outcomes of children with congenital anomalies [UU]
• Co-ordinate external data requests [UU, QMUL]

 For clarifications on work on this or help kindly email [email protected]